The press release accompanying the awarding of first grants to individual EDS sufferers can be found here.
NOTES TO EDITORS
About Mind Body EDS
Mind Body EDS is a new charity aimed at raising awareness amongst the public and medical community about the range of Ehlers-Danlos syndromes. Its goals include providing financial support to individuals and families to enable effective early diagnosis and treatment, as well as towards EDS research. EDS is a group of genetic conditions affecting the body’s connective tissue resulting from collagen defects. Collagen essentially acts as a ‘glue’ keeping the body from falling apart and is responsible for supporting the skin, tendons, muscles, ligaments, blood vessels, bones, eyes and vital organs and therefore affects the entire body. Common symptoms are: dislocations/subluxations of joints, chronic pain and fatigue, easy bruising, aortic and/or organ ruptures, palpitations, digestive disorders and other comorbidities. For more information, please visit the website at www.mindbodyeds.org.uk
About the Mind Body EDS ‘Thumbprint’
The choice of the ‘thumbprint’ logo emphasises the fact that no two patients with EDS are the same. Just as the process of diagnosis, treatment and management is always different, so the thumbprint representing each individual’s EDS journey is similarly unique.
The black and white impression of a thumbprint also symbolically represents the stripes of a zebra. In medical school doctors are taught that, “when you hear the sound of hooves, think horses, not zebras” - in other words, assume that the simplest and most common diagnosis is likely to be correct (the ‘horse’) and avoid misdiagnosing for rare illnesses (the ‘zebra’). Unfortunately, EDS sufferers can go years, even decades, without proper diagnosis, as many in the medical community forget that ‘zebras’, whilst less common, do exist. And, just as no two zebras have identical stripes, so no two thumbprints are the same.
With its ‘thumbprint’, Mind Body EDS aims to leave its mark and make a positive impression on those affected by EDS, the medical community and broader society.
About the Founder
Laura Sylvester, 25, lives in Tilford, Surrey. Her medical symptoms went unrecognised for more than a decade until 2014, when she was diagnosed as having Ehlers-Danlos syndrome (Hypermobility, hEDS), together with a number of other comorbidities. Over this period her condition had deteriorated substantially and, with no specialist treatment available in the UK, she had to go to the USA for urgent life-saving surgery. Since then, Laura has undergone a total of six brain and spinal operations in less than two years.